About Me

I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.

The Harlie Fund

Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.

The Harlie Crew

We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.

With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.

Wednesday, December 11, 2013

Just wanted to give you a quick update... We took Harlie to her pre-op appointment with her pediatrician today. While we were there, she had a spot on the other side of her neck (smaller than the one last week) that opened up on it's own (or the trach collar rubbed it open). I don't know what's up with this incision! He wants to wait on her blood work results before giving us his blessing for the heart cath on Friday. We are so close...

We left there to get blood work done. Harlie was not happy about that at all. I never did get a chance to tell you about the last time she had to get blood work done there (Labcorp). Brandy was with us that day (maybe a month ago?) and Brandy offered to hold her down for it, so I didn't have to. She's so thoughtful.

Well, after they put the elastic band on and were ready to stick her, she started signing "potty." Clearly, I thought she was just trying to get out of it. And even if she wasn't, she only needed to wait another two minutes and then they would be done. There was no way I was going to have them stop while they had everything out and ready to stick! Well, she peed anyway. All over poor Brandy. When she stood up she said, "Oh, and now it's going into my socks." If you've ever had to go and have blood work done, you know the chair you sit it and how the seat is kinda scooped so you sit in it? Well that was full of pee after Brandy stood up! Harlie was soaked, Brandy was soaked, and there was pee in the chair and on the floor. Oops.

Of course they yell for housekeeping. And as we got together enough to leave the room, they said, "Thank you!" I had to laugh. And then we said, "No, thank YOU!" They really were fantastic. They were so sweet to Harlie and you could really tell that it was killing them to stick her.

Anyway, so this time Jamie was with us. We made sure that Harlie had already used the potty before they sat down. Jamie offered to hold Harlie for me. I love my nurses and how good they are to me. Some of the same people were there to do this blood draw as the last time. Again, they were so compassionate! One of the nurses said she just couldn't hold Harlie's arm - so she went and got someone else to help. I was trying to get Harlie to understand that it will be so much better if she just holds still. So, I asked her if she wanted one stick, or three sticks. She immediately responded, "one" and I said, "Then you have to hold still." She tried, God bless her! Luckily, they got it on the first try. And then one of them gave her hug afterwards.

We've really noticed recently how much more expressive Harlie is getting. For example, when Murphy got home from school today, Harlie showed him her bandage from her blood draw. I know that doesn't sound like much. But the fact that she wanted to show him and did so totally on her own, is a big deal to me.

Anyway, her pediatrician wants to see what her white blood count (WBC) is today to make sure that it isn't higher than what it was last week (10,000, which is normal). My fingers are crossed that the number is no higher and that the culture doesn't grow anything. The results from the culture they took last week in the ER were NOTHING. Nothing grew, which is great!

Wednesday, December 11

I just heard from the pediatrician's office that her WBC is still 10,000! So, it's a go! Whew! Yesterday, a nurse from the cath lab in DC called to go over everything. She said that she was first case and that we had to be there at 7am. Which meant we would have to leave at 4:30am! Luckily, she called today and changed our time to 9am. YAY!

It's so weird to be saying "yay" about something like this. I'm definitely not looking forward to the day/procedure itself. But, I am looking forward to hearing some info about what's going on in that mysterious body of hers. I'm actually nervous about the whole thing.

Anyway, since I haven't posted pics in a while, I thought I'd share some now. Totally random. All bad quality, taken with my phone.

During speech therapy. She loves it.

Does that face say, "I love you" or what?

This is what she does when she sees mewalking toward her with her feeding.Kinda hard to get to her g-tube like that.

Helping around the house.

She's very thorough.

She's really gotten into washing the dishes. I was in the office the other day when I heard the water running in the kitchen. I was very focused on what I was doing, so I kind of forgot about the water. Later on, when I went into the kitchen, all the dishes that were in the sink that were dirty were in the drying rack. Clean. She is too funny.

I think he was looking for his buddy, Otto.

He's such a good sport. Cooper put the stuffedpug on top of him and he just sat there.

Our goldfish have their own tree and snow.

I LOVE the way she is looking at Murphy. I think she's just tickled to be a part of licking the icing.

2 comments:

For a second I thought you got your second pug. ;) I am totally amazed that Harlie washed the dishes. That's just crazy! In an awesome way! ....Super excited that the heart cath is a GO!!! Great to see all the pics. XOXO Miss you!

Murphy

Murphy is 13 and is in eighth grade. He is constantly making us laugh with his crazy sense of humor and wonderful imagination. He is a great big brother and adjusted with no problems to this role. He has been an easy kid to raise from the get-go (despite the fact he entered this world 5 weeks ahead of schedule).

Harlie Caroline

Harlie is 10 and is in fourth grade. She has Goldenhar Syndrome, VACTERL Association and a lung defect that required the removal of 2 lobes on the right side. After over 50 surgeries (4 of them open heart), she is remarkably age appropriate. She is the sweetest, funniest little girl I've ever met. You can't help but fall in love with her.

Cooper

Cooper is 8 and is in third grade. He is a very talkative, high energy and affectionate little guy. He is all boy and he is a very funny kid. We are so lucky to have him!

Rooney

Rooney was born on February 5, 2012. He has been a wonderful addition to our family. He is such a great little dog and I just can't imagine life without him now! I love him so much!!!